Recently Diagnosed

So I was actually diagnosed with Crohn's disease yesterday, although I've been having symptoms for about 8 months now. I'm not sure what I'm hoping to accomplish by posting here, or what sort of response I'm looking for, but I thought I'd give it a shot (my mom told me to).

I'm 24 years old, and have always been able to eat whatever I wanted. So initially, my thoughts were "Crap, I can't eat like a jerk anymore!" But as this has started to sink in it's really been getting me down. This whole past few months I've just kept telling myself that it would be over soon, and that I could go back to normal once the doctors figured out what was making me sick and fixed it. I had an appointment yesterday morning to review the results from my latest test (MRI), and was not prepared for it whatsoever. I kind of went into shock for a little while, and just didn't process anything. I got out of the doctors and went to work, where I placed a quick call to my fiance to tell her. I managed to squeak out a few words telling her my diagnosis and telling her I loved her before I had to hang up.

Everything just kind of washed over me at that point and I just cried at my desk. I know this isn't going to kill me, and that there are a lot worse conditions out there, but I just couldn't stand the thought that I'm never truly going to be able to get away from this. All the while I've been dealing with these embarrassing, uncomfortable health issues the thought never crossed my mind that they could be anything but temporary. I mean for christ's sake, I'm a professional musician who will be shortly going on a tour throughout the US, and I'm now unsure whether I'll be able to make the drives between concerts without having to stop 12 times!

The new medicine I'm on has really taken my appetite away, and as I speak it's almost 2 AM and I am nowhere close to being able to sleep.

I know the road gets easier down the line, I'm just having a hard time seeing it right now. Any recommendations on how to proceed, or words of wisdom are much appreciated.

Hello and welcome to the forum.

I am sorry to hear about the diagnosis, there is certainly a lot to take in and it's not a nice things to have and yes it can be quite embaressing initially. Just know you have come to the right place for lots of helpful info and support :hug:

What medication have you been given?

AB
xx

Budesonide. If it was just the one medication it would be fine, but I'm also on Nexium for my ulcer, I'm on Bentyl for the intestinal spasms, I also take sumatriptan for migraines, I have to take a multivitamin because I have such a hard time eating with my nausea, and I'm on prescription allergy medicine. All in all I have to pop about 12 pills through the course of each day, and it just makes me so nauseous that I am never hungry. I've lost about 30 pounds since my symptoms started.

When are you next due to see your GI? Did the nausea start with the Budesonide or one of the other meds? If you are continuing to loose weight it may be worth asking your doc about further supplementation for you, liquid shakes for example? Also they might be able to give you something for the nausea specifically.

Hi there and welcome

I'm so sorry to hear of your Crohn's diagnosis, that's really tough I'd suggest giving this thread a read which may provide you some insight.

That you have migraines and nausea actually makes me wonder about a magnesium deficiency. Symptoms of Mg deficiency can include headaches and well as nausea when eating and such deficiencies are quite common in people with Crohn's disease. I'd suggest asking your doctor to test you. Throwing in a vitamin B12, vitamin D, and folate test at the same time would be useful as well.

My greatest advice is, once you're ready, begin to educate yourself about every facet of this disease. The more you learn the better you're going to be able to advocate for yourself. And as this is (at present) a lifelong condition, the better you're able to advocate for yourself the better off you're going to be in my opinion.

We're here for you.